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Author
Topic: Going Off Meds (Read 10014 times)

I want to go off meds and see what happens, but of course it's scary. I was treated early during the acute phase (about six weeks after exposure); and have been compliant and undetectable for eight years. Any guesses on what might happen? Any advice?

I want to go off meds and see what happens, but of course it's scary. I was treated early during the acute phase (about six weeks after exposure); and have been compliant and undetectable for eight years. Any guesses on what might happen? Any advice?

More a request. Could you tell the forum if you are doing this under the care and/or with the support of a specialist? Will you continue to get blood work on a regular basis?

I have heard chatter that some research and some doctors are wondering if a small percentage of people in your shoes might be able to remain undetectable for quite some time after stopping treatment.

I will assume you have great CD4 and have always been undetectable?

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“From each, according to his ability; to each, according to his need” 1875 K Marx

If your experience is like mine you'll gradually get weaker until you are either hospitalized and/or die. I was saved in the nick of time but permanent damage was done.

Why are you making this choice?

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

I want to go off meds and see what happens ... Any guesses on what might happen?

eventually it'll be the same thing that happens whenever anyone is untreated

now in the short run however not much will happen. Unfortunately for your question, I don't believe there's been a study yet on exactly how long it takes someone who has been successfully treated, to stop treatment, and either end up sick with AIDS or dead; but, as I said, that is what eventually happens. The science clearly tells us what happens with untreated HIV. In fact, it contributes a great deal to the 15k+ HIV poz people who die every year in America (according to 2010 CDC data reports)

In my very humble opinion, anyone who goes off meds, especially if they have obtained successful treatment (sustained cd4s climbing, UD, and no sides), is pretty foolish; because messing with something, especially when it ain't even broke, is usually a pretty foolish move.

as just a tiny piece of ancedotal evidence I would put forth that is takes exactly 9 months. Or at least that's how long it took for me to stop meds and end up back in the hospital fighting for my life. Not once; but three times that happened to me! Those incidents happened in the late 90s, of course, when the meds weren't as refined as today; but if it was me, I'd still be thinking 9 months might be the longest I might last.

Your mileage will probably vary though; however don't forget to tack on the extra systemic damage you'll get by allowing yourself to become more infected for an amount of time, and the chance of your HIV mutating and gaining resistance to a regime that had been happily working for you. Those are definitely aspects to consider.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

You should disscuss this with your doctor.There are proper way in drug interruption so that in wont cause resistance, or minimize the risk, like changing meds first to something that dont have long half life, like protease inhibitor.

Sometimes pregnant women who have gone on meds despite having very good numbers will go off the meds once they've given birth. They can usually get at least a year, often more, before their numbers indicate the need to go back on meds.

You need to understand that if you do take this course of action, you will need to be closely monitored - at least every three months - so you can get back on them before your immune system tanks.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I don't know DiggerDive's motivation or planning with professional assistance, as he hasn't replied yet, but I am curious as well -- and hope that everything is well supervised so that good health remains in tact.

I imagine, and DiggerDive correct me if I'm wrong, that he may be trying to investigate whether he has a "functional cure" based on timing of starting meds and years of success with that.

My question is, if people, like the few that have been in the news lately, are "functionally cured", how can this be determined? Does it require going off meds to see what happens?

to determine if someone was "functionally cured" they most definitely would need to take the risk of stopping meds to prove that the meds were no longer needed. They would need to stop meds and be monitored for several yrs (if the functional cure was proving to be true) to know whether their HIV would remain checked or would resurge (which could happen as early as weeks or several months)

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Not because I think if you do your going to get sick and die in says but because of the fact that you did start meds so quickly after diagnosis that you may be shooting yourself in the foot.

The science is pretty close to getting to that functional cure for people who start meds right away. BUT, they aren't quite there yet. If you stop meds now you risk having the virus resurge and re seed your body and creating new resoviors. Which in the end could prevent you from ever being cured (if that's what your intending).

I have a lot more questions than answers. I'm surprised that working in public health in the educational portion no less, that you aren't aware of the eventual progression for MOST people who stop treatment.

Others have asked some specific questions that are legit. Mostly, is this under the direction/advice of a doctor?

I don't know DiggerDive's motivation or planning with professional assistance, as he hasn't replied yet, but I am curious as well -- and hope that everything is well supervised so that good health remains in tact.

I imagine, and DiggerDive correct me if I'm wrong, that he may be trying to investigate whether he has a "functional cure" based on timing of starting meds and years of success with that.

My question is, if people, like the few that have been in the news lately, are "functionally cured", how can this be determined? Does it require going off meds to see what happens?

I think they can do what is said as "viral culture tes". take your blood, clean it from ARV, put it in a PMBC media, and see if the virus replicate. Its better then stopping meds. Just that, only certain labs can do that. And probably not 100% the same with when you stop meds. and... costly, compared with just stop the meds.

Stopping meds could cause resistance esspecially if using long half time drugs like nevirapine and effavirenz (which is in atripla). Change of these to protease inhibitor based regime prior to it probably better.

Apologies for not being clearer up front. Cicero has it exactly correct as to my thinking (i wasn't carelessly considering). I have been in the care of an HIV doctor prior to my exposure (because he's an awesome guy).

About two weeks prior to my acute illness setting in I requested an HIV test because I feared exposure. My antibody test was negative, however I had a "low" viral load (this doc looks for both when testing). Two weeks later I was sick as a dog and had over a million copies at which point I started treatment. Within a month I was undetectable.

I had read the study of the 14 men in France who were treated within "several months." This sounded like a possibility for me. My doctor, frankly, has only had two patients (of thousands) whom he's had go on meds as quickly as I have following a negative antibody, but positive viral load test.

I think that You have a real chance to be cured. If i was You I would take the meds the next 5-7 years, then go to an expert who can measure the latent cells and then stop the meds in a controlled clinical study. I think Your latent pool is very small and can be eradicated naturally in some years of treatment. I wouldnt stop the treatment now, it could destroy Your chances to be cured.

I think that You have a real chance to be cured. If i was You I would take the meds the next 5-7 years, then go to an expert who can measure the latent cells and then stop the meds in a controlled clinical study. I think Your latent pool is very small and can be eradicated naturally in some years of treatment. I wouldnt stop the treatment now, it could destroy Your chances to be cured.

It's been eight years already; is there evidence or research that another seven will be meaningful?

I know some researchers, and overheard a conversation about several trials being on their way for approval

They have new ideas about how to better select patients, not like the (now old) SMART study , that was a useful fiasco

Doing a TI (treatment interruption) in a CT context would have several benefits:1- you will have expert supervision2- if you 'succeed' noone will challenge your 'success'3- will help research

I also hope you will remain active on this forum. Patients need a place to share ideas and experience. I like people who try to think by themselves. Other sites, are, on the other hand, not as open and friendly as this one

In your very specific case, I do not see anything that would not make you a good candidate for the upcoming trials.

So, yes, I personnally think that, conceptually, your proposal should not be discounted

Yet, I would see many advantages (or actually no demerit) in waiting for an ipcoming CT that would address your concerns

Sir, you will definitely go down and see your death bed. I was like you. I was first diagnosed back in the year 2000. I deny medication and treatment and start living well. My health was to the fullest. Finally by year 2008 I hospitalized and almost see death on the top of my head. My CD go below 50 and my virus load was more than half a million with more than fifteen diseases. If you stop med and try to look into what will happen to you, that will be the end game. So better continue you med for life.

Sir, you will definitely go down and see your death bed. I was like you. I was first diagnosed back in the year 2000. I deny medication and treatment and start living well. My health was to the fullest. Finally by year 2008 I hospitalized and almost see death on the top of my head. My CD go below 50 and my virus load was more than half a million with more than fifteen diseases. If you stop med and try to look into what will happen to you, that will be the end game. So better continue you med for life.

Did you read the thread? Understand it?

DiggerDave is considering a monitored treatment interruption after YEARS of successful treatment and no viral load. He was treated during seroconversion, never really lived with an active infection. His situation does not have many similarities to your experience.

We can assume if, during the treatment interruption, the signs point to a failing immune system, he is going to start treatment again.

He is not burying his head in the sand.

Otherwise, yes, untreated HIV leads to AIDS, and starting treatment in AIDS is never an easy ride. But that is not what the OP is proposing, nor his experience.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

DiggerDave is considering a monitored treatment interruption after YEARS of successful treatment and no viral load. He was treated during seroconversion, never really lived with an active infection. His situation does not have many similarities to your experience.

We can assume if, during the treatment interruption, the signs point to a failing immune system, he is going to start treatment again.

He is not burying his head in the sand.

Otherwise, yes, untreated HIV leads to AIDS, and starting treatment in AIDS is never an easy ride. But that is not what the OP is proposing, nor his experience.

No whatever condition you think you are, once you start treatment you need to be on there for life. You don’t have to take any RISK. It is that risk I am advising you to avoid. Successful treatment gives you good health and no viral load that is fine. There is no what is called ‘monitored treatment interruption’ at all. Every HIV patient passes thru seroconversion stage. Don’t let others experiment on you. Okay…Yes you are absolutely right that untreated HIV infection on whatever stage leads to AIDS and this is the whole point. Thank you.

Digger, I'm torn. Have you spoken with your doc to see if they can set up some close monitoring if you choose to do this? If it works out, they'll want to do some heavy digging to see where and if the virus persists.

Regardless, I completely understand where your coming from and if I were in your shoes I'd be thinking the same thing.

However, time for you to read up. For about a year there has been chatter about treatment interruptions again. You are wrong. Monitored treatment interruptions exist and have been around for over a decade!

I think science gave up on them about 10 years ago, but the idea is coming back in very recent years. The french in particular are researching if its possible a very few people, in special circumstances, may be functionally cured.

However, time for you to read up. For about a year there has been chatter about treatment interruptions again. You are wrong. Monitored treatment interruptions exist and have been around for over a decade!

I think science gave up on them about 10 years ago, but the idea is coming back in very recent years. The french in particular are researching if its possible a very few people, in special circumstances, may be functionally cured.

Thank you sir for your invitation to the web site you posted for “READING”: But I have some few points to make. One, I really don’t have time to go thru that kind of garbage as I am lucky enough in living in a country where there is always a work to do. Thanks to the treatment I am on, I work more that fourteen hours a day. So better I spend my time on doing something that I think it is productive and helpful. Second, I feel responsible not to advise people basing myself on the reading of such delusional articles. I am well acquainted with the conventional knowledge of the problem where I am and attempt to live by that. I know for sure going off the meds even for a single day has a consequence once you are on. Third, I really don’t know how you got your virus. But I believe that risky behaviors, negligence and carelessness are the main reason why people acquire the virus. Taking a risk we got the virus and now we don’t have to advise people to take additional more risk to keep away from treatment which I believe is a deadly move. My piece of advice to the poster is that he/she need to stay on the treatment you are on. The fact that you were seroconversion when you start the treatment is a plus. It means that you have better defense against your infection with of course the treatment you are on. If you have a problem with a particular med, change it and go back immediately on other meds. Beware that HIV is a dangerous staff you need to keep your eye on. Peace….

Thank you sir for your invitation to the web site you posted for “READING”: But I have some few points to make. One, I really don’t have time to go thru that kind of garbage as I am lucky enough in living in a country where there is always a work to do. Thanks to the treatment I am on, I work more that fourteen hours a day. So better I spend my time on doing something that I think it is productive and helpful. Second, I feel responsible not to advise people basing myself on the reading of such delusional articles. I am well acquainted with the conventional knowledge of the problem where I am and attempt to live by that. I know for sure going off the meds even for a single day has a consequence once you are on. Third, I really don’t know how you got your virus. But I believe that risky behaviors, negligence and carelessness are the main reason why people acquire the virus. Taking a risk we got the virus and now we don’t have to advise people to take additional more risk to keep away from treatment which I believe is a deadly move. My piece of advice to the poster is that he/she need to stay on the treatment you are on. The fact that you were seroconversion when you start the treatment is a plus. It means that you have better defense against your infection with of course the treatment you are on. If you have a problem with a particular med, change it and go back immediately on other meds. Beware that HIV is a dangerous staff you need to keep your eye on. Peace….

Why the attitude ? . Mecch made some excellent points and you are wrong about supervised treatment interruptions . I have had to have treatment interruptions and did not suffer any complications from it , they are sometimes necessary . I also agree that you probably didn't read the whole thread from your reactions .

There is a study being done on HIV and inflammation that involves treatment interruptions so this is not a radical question for the OP to ask by any means .

I really don’t have time to go thru that kind of garbage as I am lucky enough in living in a country where there is always a work to do. ..... Second, I feel responsible not to advise people basing myself on the reading of such delusional articles.

The VISCONTI study (Viro-Immunological Sustained CONtrol after Treatment Interruption) was funded by the ANRS, the French National Agency for Research on AIDS and Viral Hepatitis (Grant ANRS EP47)

Mon dieu, those delusional French. Always thinking they can contribute to HIV science, when all they did was discover the virus. And their scientific research culture. Don't get me started. Pure garbage!

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Okay that is fine. The choice is now for the Poster. And it is between living normal live under treatment and serve as a laboratory rat. As a concerned individual, I recommend him the former. And I think this is the conclusion of most participants under this topic.

You people are driving me crazy, the uneducated, drug obsessed ones. YES, THE PILLS SAVE YOUR LIFE, there is more and more evidence in 2013, I check every day, that being treated within 8 weeks does give you a 15% of being functionally cured. They are also doing a larger study in Asia and spoke about it in Barcelona at the conference. There are some people who feel to stay on the pills for 5 years will increased the possible functional cure to 40%, good odds is you ask me. I've been poz for almost 3 months and i can tell you it has been hell on these drugs, YES the sides have ebbed, but now my hair is falling in patches (NO I DONT HAVE SYPHILLIS) and am on Truvada and Isentress, YES, apart from the horrific hair loss that began two weeks ago, it has not been bad and I plan on staying on drugs at least 2 years before starting a monitored break, but as much as a lot of you get angry, quality of life for some of us is as paramount to living. It may not be PC but I'm sorry, I'd rather have a good 5 years and then deal wit ht he consequences then the horrific sides, SOME OF US GET.. Now I'm not advocating Euthanasia, but I do feel that at some point if people feel like giving up, it is their right.... and I felt that way long before 3 months ago when I was poz, and although sometimes had depression, never considered taking my life ever!

You people are driving me crazy, the uneducated, drug obsessed ones. YES, THE PILLS SAVE YOUR LIFE, there is more and more evidence in 2013, I check every day, that being treated within 8 weeks does give you a 15% of being functionally cured. They are also doing a larger study in Asia and spoke about it in Barcelona at the conference. There are some people who feel to stay on the pills for 5 years will increased the possible functional cure to 40%, good odds is you ask me. I've been poz for almost 3 months and i can tell you it has been hell on these drugs, YES the sides have ebbed, but now my hair is falling in patches (NO I DONT HAVE SYPHILLIS) and am on Truvada and Isentress, YES, apart from the horrific hair loss that began two weeks ago, it has not been bad and I plan on staying on drugs at least 2 years before starting a monitored break, but as much as a lot of you get angry, quality of life for some of us is as paramount to living. It may not be PC but I'm sorry, I'd rather have a good 5 years and then deal wit ht he consequences then the horrific sides, SOME OF US GET.. Now I'm not advocating Euthanasia, but I do feel that at some point if people feel like giving up, it is their right.... and I felt that way long before 3 months ago when I was poz, and although sometimes had depression, never considered taking my life ever!

You've been positive for three months and much of the shit you say is incorrect and your commenting how others are uneducated and drug obsessed? Okay

The French scientists from the ANRS (http://www.anrs.fr/ - in French, mostly, obviously) are studying in the phenomenon whereby a fraction of people treated within 8-10 weeks of acquiring HIV for 3+ years are able to control the virus at low, sometimes undetectable, levels post-meds. The cohort of patients studies is called the VISCONTI cohort.

The science is clinical (applies to real patients) but investigational. It relates to the human leukocyte antigen (HLA) system, which is a genetically based part of the immune system that regulates allergies and responses to infections. In HIV, for example, it is a particular HLA pattern that predicts allergy to abacavir. It is also a particular HLA pattern that indicates you are an elite controller. The Visconti cohort have a distinct HLA pattern but this is different to that of elite controllers. Of note, post-treatment controllers seems to have had poorer CD8+ responses and more severe primary infections when the got HIV.

It seems feasible, in a university/research setting, to do HLA typing to help decide if it is a workable idea to try going off meds and see if you can maintain viral control. The Visconti team, or a close reading of the science, can tell you what HLA pattern, and perhaps other clinical indicators, to look for. But be prepared for disappointment, it's a fraction of people.

The paper listed above has 2 email contacts for the key researchers at ANRS in the author list.

It is rarely dangerous for people treated in primary infection to cease meds, even if this is temporary, provided current CD4 count is over 500 and there is close monitoring. But there is a small risk of serious health events if viral resurgence provokes a strong immune reaction.

The VISCONTI study (Viro-Immunological Sustained CONtrol after Treatment Interruption) was funded by the ANRS, the French National Agency for Research on AIDS and Viral Hepatitis (Grant ANRS EP47)

Mon dieu, those delusional French. Always thinking they can contribute to HIV science, when all they did was discover the virus. And their scientific research culture. Don't get me started. Pure garbage!

OMG…by the way Sir are you not one of the folks here in this forum who laughed to death at me when I say years ago that a good friend of mine Christian Maggiore, HIV-rethinker has been closely working with famous scientists like Peter Dursberg, David Rasnick and many others in the US. Don’t you know that these people were best world scientists who some of them won noble prize in Science. But here what matter is the truth. Truth really matters.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

As this is turning into a hi-jack, I will bow out 'cause the moderators will deal with you.

A general rule of thumb is to go with respected scientists, not a poor soul who, IMO, caused the death of her daughter and then killed herself.

My point here was not at all to talk about this lady and the scientists she said was working with. I already back off these people's idea and thanks to the treatment I am now in support of, I am able to re-gain my health. So, the point is that we don't need to be biased of people who are under the label of scientist. I really don’t know who is and is not respected scientists as far as human health is concerned.

full disclosure, I'm a doctor. I'm also in the same boat as you. I started treatment right after I got my result and I had a recent negative test before this so I know that I was treated quite early in the infection.

You have a reasonable question and I suggest that you talk to your doctor to do this with him and with frequent blood work and lymph node studies to make sure that you are not simply letting the virus go wild. This way you can start your meds again right after your docs notice a change in viral activity and VL.

listen, this virus doesn't just live in your bloodstream. It's mainly hiding and working and replicating inside your lymph nodes which are all over the body including the gut. So even if you were off meds and you see nothing in your blood, the virus is still replicating inside your lymphatics and they can suddenly show up in extremely high numbers and kill.

The meds are there to ensure that the virus' replication (which is reproduction) to slow very very much. But even the meds don't completely stop it and that's why once people miss doses or stop meds, the virus starts to work back at old speed to produce more copies...

So there is no good reason to stop your medications. IF you are just wondering about what its, that is reasonable. BUT do it under surveillance of your doctor. They can even study by lymph biopsy to see viral activity there and also your VL.

Two HIV-positive men who each displayed no signs of the virus for extended periods off antiretrovirals (ARVs) following chemotherapy and stem cell transplants to treat their lymphoma have both experienced a viral rebound, The Boston Globe Reports. Researchers from Harvard Medical School and Brigham and Women’s Hospital announced not-yet fully analyzed results of the study of these men at the Sixth International Workshop on HIV Persistence, Reservoirs and Eradication Strategies."

Two HIV-positive men who each displayed no signs of the virus for extended periods off antiretrovirals (ARVs) following chemotherapy and stem cell transplants to treat their lymphoma have both experienced a viral rebound, The Boston Globe Reports. Researchers from Harvard Medical School and Brigham and Women’s Hospital announced not-yet fully analyzed results of the study of these men at the Sixth International Workshop on HIV Persistence, Reservoirs and Eradication Strategies."

DiggerDave, I wouldn't stop my meds without a doctor's advice. We all want to be cured but at the same time we need to thankful for what we have. Especially for people like you who started treatment early, just one pill a day is all it takes to have a normal life with no side effects and that is an amazing gift when you compare it to the quality of life for people with other life-threatening, incurable diseases. There's evidence to suggest that some people treated early might be functionally cured, but doctor's just don't know enough about it right now. It would be a shame if you went off meds now, your virus rebounded, and you became resistant to the easier drug protocols only to find out five years from now that you could have been functionally cured if you had just done x, y, or z.

I also started meds shortly after seroconverting and was undetectable in less than two weeks, but I'm going to faithfully take my meds until doctors figure this thing out.

There is a caveat with the German patient. The author notes it at the very end. Researchers were able to isolate viable HIV from stimulating the patient's CD4 T-cells. It's great that he has been functionally cured since 2004, but who knows what will set off a recurrence in his case.

Also, most are not lucky enough to be caught in the acute phase of infection. Unless a person matches the situation of the German patient and the VISCONTI group, going off meds would be like jumping off an ocean-side cliff in the dark. Even in their situation, theirs are closely monitored research settings.

My additional thoughts tying in the two Boston patients and the recent Hopkins study on larger-than-thought reservoirs.

Current universally available blood tests can only pick up the RNA in the blood. The ability to measure dormant provirus, and thus the reservoir, has been largely limited to specialized labs.

If the reservoir is as large as the Hopkins researchers say, shouldn't they also be more easily detectable? Couldn't one develop a more universal test for reservoirs knowing that? I mean, hidden reservoirs have been used to explain recurrence. Its presumed lack or smaller size has equally been used to explain functional cures.

We now have several fellow patients who have been lucky enough to achieve functional cures. We also have those who were able to stay UD off meds for at least a period of time. Many here have also achieved UD levels, and I'm hoping to join you guys soon. This spectrum would be the perfect set of patients to begin developing a more universal test of measuring reservoirs. Or at least some surrogate.

Creation of newer universal tests that can measure reservoirs consistently may be a potential milestone to understanding these situations. And better yet, how to achieve practical cures.

TLDR people: In answer to the OP, the docs don't know enough at this stage to safely recommend going off meds. At least not without careful monitoring. Like in a research / trial setting.

In the next few years they are going to start tests with antibody-based treatments and therapeutic vaccines that might allow people in your shoes to be cured. Why risk worsening your disease now by just stopping haart when there is the potential for a new treatment in a few years that will allow you to definitively stop?